Bilatteral CI for daughter

Lillys dad

Lillys dad

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Earlier this week the audi staff did a audi test on my daughters nonimplanted ear. they discovered a signifigant hearing loss that has occured during the last 6 months. She was hearing unaided at 85-90 dbs. It went up to 95 dbs.
Now we are starting to check into the possibility of a CI for that ear.
This new loss is in the lower sound range. I planned on just getting the one ear implanted and letting her chose if she wanted another CI in that ear when she got older. I also wanted to keep the aid in her left ear to keep the audi nerve stimulated so she may be able to take advantage of any future techologies such as stem cell stuff.
I was told that with this additional hearing loss, the aid is not enough stimulus to preserve the nerve.
I talked to a ent surgeon and a VERY qualified audiologist who both stated the stem cell research and other "new technologies" will not be available in time for my daughter to take advantage of.
As it looks for now, if she is ever going to be able to hear out of her left ear, she must have a bi latteral implant in the relalively near future.
Now, i know that threre are some here that are anti- C.I. If ya just wanna complain abou tme being "cruel" and so on, save yer breath. I want real advice from people that have undergone similar experiences from the perspective of the person recieving a bi latteral or a parent that have been through this situation.
As I said above, I wanted her to make this decision when she got older, but with her hearing worsening, and the aid not offering enough to preserve the nerve, that option is fading rapidly.
 
Lillys dad said:
i know that threre are some here that are anti- C.I. If ya just wanna complain abou tme being "cruel" and so on, save yer breath. I want real advice from people that have undergone similar experiences from the perspective of the person recieving a bi latteral or a parent that have been through this situation.
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Why do you feel that we are anti-CI just because we shared our opinions? Don't forget, this is a forum, where everyone shares their opinions and feedback's, They are going to be members here who opposed CI on children, that doesn't make anyone anti-CI, on the other hand there gotta be members here who agrees that it's the parent choice and decision. Nobody ever says that any parent were cruel. Why don't you try to get to know us members instead of making accusations? :thumbd:
 
Cheri said:
Why do you feel that we are anti-CI just because we shared our opinions? Don't forget, this is a forum, where everyone shares their opinions and feedback's, They are going to be members here who opposed CI on children, that doesn't make anyone anti-CI, on the other hand there gotta be members here who agrees that it's the parent choice and decision. Nobody ever says that any parent were cruel. Why don't you try to get to know us members instead of making accusations? :thumbd:
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:gpost:
 
If you read some posts - there HAVE been some made by individuals here who do label themselves anti-CI, although those posts have mostly been filled with profanity, so I don't know how much face value to give them.
 
Lillys dad said:
Earlier this week the audi staff did a audi test on my daughters nonimplanted ear. they discovered a signifigant hearing loss that has occured during the last 6 months. She was hearing unaided at 85-90 dbs. It went up to 95 dbs.
Now we are starting to check into the possibility of a CI for that ear.
This new loss is in the lower sound range. I planned on just getting the one ear implanted and letting her chose if she wanted another CI in that ear when she got older. I also wanted to keep the aid in her left ear to keep the audi nerve stimulated so she may be able to take advantage of any future techologies such as stem cell stuff.
I was told that with this additional hearing loss, the aid is not enough stimulus to preserve the nerve.
I talked to a ent surgeon and a VERY qualified audiologist who both stated the stem cell research and other "new technologies" will not be available in time for my daughter to take advantage of.
As it looks for now, if she is ever going to be able to hear out of her left ear, she must have a bi latteral implant in the relalively near future.
Now, i know that threre are some here that are anti- C.I. If ya just wanna complain abou tme being "cruel" and so on, save yer breath. I want real advice from people that have undergone similar experiences from the perspective of the person recieving a bi latteral or a parent that have been through this situation.
As I said above, I wanted her to make this decision when she got older, but with her hearing worsening, and the aid not offering enough to preserve the nerve, that option is fading rapidly.
Click to expand...

IMAO, only limited get CI in one ear because it works so well with one ear for profound hearing loss.

It's highly recommanded for ur daughter to attend deaf school and purchase other hearing aids like analog with programming or digital, deaf school would help u to purchase with discount or other services that can help u. It maybe work so good and hearing aid is work so well for me because I'm profound hearing loss. I don't remember about my dbs.
 
Hmmm I see your dilemma. So is it a progressive loss in that ear? Are they saying that she could further lose hearing in that ear? What benefit is she currently getting from the hearing aid? My hearing loss was around that level in my most depended on ear and I did well with my hearing aid but then it was very stable until I finally lost it last year. It's a shame because the original plan of letting her have both the option of the CI and a hearing aid when she is older was a good one.

It would be a waste of that ear not to do anything at all. If the loss is progressive then I would consider a second implant.

When I was growing up I had only one hearing aid until the age of 10. And ironically it was in my worst ear. I finally got a hearing aid for my better ear but by then I depended more on my worst ear and my better ear was only good for environmental sounds. I've no idea why they did that. Mum told me that they thought at the time that they could save that ear for later, not realising that speech perception is much harder to acquire in later years.

So now that I've lost my hearing in my worst ear I am depending on the better ear and it is a real struggle. I often wonder that if I had been given 2 hearing aids from the start whether I would have had the sudden loss at all since I would not have been depending so much on my worst ear.

So two ears are better than none.
 
If she were my daughter, I would wait until she was older and let her decide if she wants a second CI. I’ve lived with one ear my entire life, and although it’s a pain in the ass sometimes, I’ve learned to deal with it. There’s no hurry.
 
the problem is - if he waits till she can decide - that ear might no longer be viable for implantation.
 
Lilly'sdad, what test did they do? Was it a complete through audilogical examination? Sometimes the ABR can be inaccurate, like indicate a "deaf" loss, where there's actually a hoh loss.
Also, have you asked if she'd be able to benifit from a body worn aid or a high frequncy loss transponder?
You could also not immediatly implant her, but wait until she's a little older to decide on implantation. Not grown up......it would probaly be impossible for an adult who was deaf as a kid, to get insurance coverage, but at least older then eight or nine. I remember someone saying that the benifit from bilateral implantation, isn't as significent. There are benifits, but it's mostly localizing sound (just a FYI, I have bilateral aids and can't localize sound at ALL) or hearing well in noise. Very ambigious.
 
neecy said:
the problem is - if he waits till she can decide - that ear might no longer be viable for implantation.
Click to expand...

Yeah, you're right. I wasn't reading carefully enough. :Oops:
 
The first things that came to my mind are:
Having the use of both ears helps speech comprehension. It has to do with the way the brain processes sound. I'm 100% deaf on the left side but many hoh people I know have told me that hearing speech with both ears allows them to understand much better.

I also thought that it might be wise to wait and see if cochlear implant technology advances. But then I thought that waiting might not be worth it. If your child grows up without the use of that ear, how efectively will they be able to use it if they got it implanted in the future. Even if she was a candidate for an implant at the time, how well will her brain adapt to it.

Considering she had one very succesfull implant, I would say to go along with a second. My biggest aversions to CIs are the surgery and medical risk that go along with it.
 
Cheri said:
Why do you feel that we are anti-CI just because we shared our opinions? Don't forget, this is a forum, where everyone shares their opinions and feedback's, They are going to be members here who opposed CI on children, that doesn't make anyone anti-CI, on the other hand there gotta be members here who agrees that it's the parent choice and decision. Nobody ever says that any parent were cruel. Why don't you try to get to know us members instead of making accusations? :thumbd:
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Exactly !!
 
farmerjoe said:
I'm 100% deaf on the left side but many hoh people I know have told me that hearing speech with both ears allows them to understand much better.
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What do you have on the right side?
 
Lillys dad said:
Earlier this week the audi staff did a audi test on my daughters nonimplanted ear. they discovered a signifigant hearing loss that has occured during the last 6 months. She was hearing unaided at 85-90 dbs. It went up to 95 dbs.
Now we are starting to check into the possibility of a CI for that ear.
This new loss is in the lower sound range. I planned on just getting the one ear implanted and letting her chose if she wanted another CI in that ear when she got older. I also wanted to keep the aid in her left ear to keep the audi nerve stimulated so she may be able to take advantage of any future techologies such as stem cell stuff.
I was told that with this additional hearing loss, the aid is not enough stimulus to preserve the nerve.
I talked to a ent surgeon and a VERY qualified audiologist who both stated the stem cell research and other "new technologies" will not be available in time for my daughter to take advantage of.
As it looks for now, if she is ever going to be able to hear out of her left ear, she must have a bi latteral implant in the relalively near future.
Now, i know that threre are some here that are anti- C.I. If ya just wanna complain abou tme being "cruel" and so on, save yer breath. I want real advice from people that have undergone similar experiences from the perspective of the person recieving a bi latteral or a parent that have been through this situation.
As I said above, I wanted her to make this decision when she got older, but with her hearing worsening, and the aid not offering enough to preserve the nerve, that option is fading rapidly.
Click to expand...
From a parent with a daughter (3½) using bi-lateral CI since she was activated in november 2004: Yes.
Our daughter got both CI in 1 operation. All went well. OUr experience (summarized) 4 hour operation. Little bit sick afterwards, got 1 asprine after operation, otherwize nothing. Playing (with two nervous parents trying to keep up with her) with a tricycle just hours after she woke up.

Our experience is:
Better communication in noisy environment.
Good sence of where sound is coming from.

But the best thing:
Some weeks ago, 1 CI broke. She could still hear with the other while the broken one was repaired. Due to mailsystem, she was 1½ week with only 1 CI. I hate to think that she had to be without sound for that period.
 
Someone starts a thread and asks "I want real advice from people that have undergone similar experiences from the perspective of the person recieving a bi latteral or a parent that have been through this situation.
" and the first reaction is this
Cheri said:
Why do you feel that we are anti-CI just because we shared our opinions? Don't forget, this is a forum, where everyone shares their opinions and feedback's, They are going to be members here who opposed CI on children, that doesn't make anyone anti-CI, on the other hand there gotta be members here who agrees that it's the parent choice and decision. Nobody ever says that any parent were cruel. Why don't you try to get to know us members instead of making accusations? :thumbd:
Click to expand...
He's not asking for opinios, discussions. He's asking for advice from people that share his perspective as a dad with a deaf child that might get CI.

Sorry Sheri. I appreciate all your opinions, suggestions and good advice, but this is where you have nothing to add. Your post was OUT OF LINE!
 
Cloggy said:
Your post was OUT OF LINE!
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I'm sorry I disgree, if I were to create a thread and say something like this " I don't need to hear from the CI users etc " , then what kind of respond will I get from them? think about that for a moment there


It may not bother you is because you're not looking at it from both views as I am
 
^Angel^ said:
I'm sorry I disgree, if I were to create a thread and say something like this " I don't need to hear from the CI users etc " , then what kind of respond will I get from them? think about that for a moment there

It may not bother you is because you're not looking at it from both views as I am
Click to expand...
Im sorry to disagree. If a topic say's "I want information from people that became deaf regarding this-and-this subject" I will not reply.

Had she been giving information or an opinion, then I would agree with you. But Cheri didn't even give an opinion, she just started firing at a person that had the courage to start a thread, looking for information.
 
Cloggy said:
Im sorry to disagree. If a topic say's "I want information from people that became deaf regarding this-and-this subject" I will not reply.

Had she been giving information or an opinion, then I would agree with you. But Cheri didn't even give an opinion, she just started firing at a person that had the courage to start a thread, looking for information.
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Because he said he don't want to hear from ANTI-CI


Instead of pin point the blame on who did what or why, look at it from both sides Cloggy, and the sad part is you don't....


Quit your blaming games
 
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